Hi all! I am new to this forum. I was diagnosed back in May 2017 with rectal cancer T3a possible N2 M0. I was not completely shocked because I had been having suspicious symptoms for a while, and I had read that study that came out about the rise in colorectal cancer among people in their 20's and 30's. I got through the initial chemo/radiation very well, which reduced the tumor to almost nothing, leaving lots of scar tissue. My LAR surgery in September lasted almost six hours but was successful. All in all, despite some low points along the way, I have managed pretty well with no complications so far. I don't love being on Oxaliplatin (I've had one infusion so far), but I know that it's working so I'm going to push through. I got the first infusion in my arm, but I'm getting a port placed next week because of the vein irritation. The Xeloda barely has any side effects for me.
At any rate, I have a temp ileostomy and it's giving me some woes. The surgeon did a good job with it, and I did have a nurse in the hospital as well as follow-up home healthcare nurses help me with learning how to change the appliance and do skincare. I know that because it's a loop ileostomy it tends to have leakage because of how close it is to the skin. My stoma is a weird oval shape and it keeps shrinking, making it difficult to cut the wafers correctly. I'm constantly having to resize them. I am now almost six weeks post surgery, so I hope that the stoma stays the size that it is and doesn't keep changing. I have started using convex appliances on the recommendation of my nurse, hoping that will help with the leakage and irritation. I also use the Hollister skin barrier rings and paste, and the Cavilon skin protectant wipes, and I just ordered some Marathon Skin Protectant after seeing it recommended on this forum.
It's also extremely active almost all the time! I eat regular meals and don't eat past 7:00 at night. I read on this forum to try peanut butter, marshmallows, and ice water before I change the appliance in order to stop the activity. However, I can't have ice water in the days following Oxi infusion. So I just change it when I can and deal with the mess. My nurse taught me to put a solo cup under the stoma secured by my underwear, which helps.
Additionally, every time I change my appliance (twice per week) my stoma bleeds a lot. I know it's a highly vascular area that gets easily irritated, but I still don't like how it bleeds on and off for several hours after I change. Does anyone else experience this? It doesn't seem good to bleed like that for so long. My nurse told me it's because of cleaning it.
All of these factors make it so that it takes me at least half an hour to change my appliance each time. Not to mention the skin irritation, which is almost all the way around my stoma right now. This is partly because I was just wearing a flat appliance, and I switched to convex. However, I wore a convex once before and there was still some irritation and leakage.
Does anyone have any recommendations, beyond what I am already doing, for skincare? Should I be changing the appliance more frequently? I think I can live with this for the next 3-4 months, but I don't like the feeling of stinging I get several times a day, either from existing skin irritation or stool leakage. Any advice is appreciated!
(By the way, I do have the number of my stoma nurse that I can call. However, I value second and third opinions, and she doesn't answer the phone on the weekends